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Accepted: 3 April 2018

DOI: 10.1002/ajim.22856

BRIEF REPORT

Continued increase in lung transplantation for coal workers’


pneumoconiosis in the United States

David J. Blackley DrPH | Cara N. Halldin PhD | A. Scott Laney PhD

Respiratory Health Division, National Institute


for Occupational Safety and Health, Background: Severe coal workers’ pneumoconiosis (CWP) is increasingly common, and
Morgantown, West Virginia
sometimes requires lung transplantation.
Correspondence Methods: Using Organ Procurement and Transplantation Network data, we updated
David J. Blackley, DrPH, Respiratory Health
the trend for CWP-related lung transplants, described CWP patients who have been
Division, National Institute for Occupational
Safety and Health, 1095 Willowdale Road, waitlisted but not transplanted, and characterized the primary payer of medical costs
Mail Stop HG900.2, Morgantown, WV 26505.
for CWP-related and other occupational lung disease transplants.
Email: dblackley@cdc.gov
Results: There have been at least 62 CWP-related lung transplants; 49 (79%) occurred in
Funding information
the last decade. The rate of these procedures has also increased. Twenty-seven patients
No funding
were waitlisted but did not receive a transplant. Compared to other occupational lung
diseases, transplants for CWP were more likely to be paid for by public insurance.
Conclusions: The increase in the frequency and rate of lung transplantation for CWP is
consistent with the rising prevalence of severe CWP among U.S. coal miners. Effective
exposure controls and identification of early stage CWP remain essential for protecting
these workers.

KEYWORDS
coal workers’ pneumoconiosis, lung transplantation, occupational lung disease, Organ
Procurement and Transplantation Network

1 | INTRODUCTION of CWP in contemporary coal miners.4–6 Subsequent reports have


identified the largest documented clusters of progressive massive
Since the first lung transplant for coal workers’ pneumoconiosis (CWP) fibrosis, the most severe form of CWP, primarily among former coal
was performed in 1996, the procedure has become increasingly miners who worked in the central Appalachian coalfields.7,8
common among miners with end-stage CWP, with median post- Coal mine dust is the only cause of CWP, which has no cure, and
transplant survival estimated to be 3.7 years.1 The average medical cost can continue to progress after dust exposure ends.9 For miners with
for a bilateral lung transplant performed in the United States is $1.2 severe CWP, lung transplantation might be indicated. In light of the
million for the period including 1 month before transplantation, through high medical and personal cost of lung transplantation, and the recent
2
6 months afterwards. The increasing trend in lung transplantation has resurgence of progressive massive fibrosis, we re-analyzed U.S. organ
coincided with a resurgence, since approximately 2000, of severe CWP transplant registry data to provide an update on the lung transplanta-
identified among working coal miners in Appalachia,3 and with a growing tion trend1 among patients with CWP, using an additional 2.5 years of
literature implicating crystalline silica exposure in the rapid progression data. We also described patients with a diagnosis of CWP who have
been added to a transplant waitlist, but who have not undergone the

Institution at which the work was performed: National Institute for Occupational Safety
procedure. Finally, to improve our understanding of which entities
and Health. finance lung transplantation for patients with CWP and other
occupational lung diseases, we assessed the primary payer of medical
Published 2018. This article is a U.S. Government work and is in the public domain in the
USA. costs for each patient.

Am J Ind Med. 2018;1–4. wileyonlinelibrary.com/journal/ajim | 1


2 | BLACKLEY ET AL.

2 | M E TH O D S Fee for Service, “Medicare + Choice” (renamed “Medicare Advantage”


in 2003), Medicare not specified, Department of Veteran's Affairs, and
We analyzed de-identified patient data compiled by the United “other government insurance.”
Network for Organ Sharing (UNOS), which administers the Organ
Procurement and Transplantation Network (OPTN), a registry of organ
3 | RESULTS
transplant-related events. We previously analyzed OPTN data to
assess the frequency and possible misclassification of CWP and other
We identified 62 patients with a diagnosis of CWP (n = 37) or
occupational lung diseases.1,10 For the current analysis, the data
pneumoconiosis unspecified (n = 25; hereafter, pneumoconiosis un-
included all lung transplant waitlist registrations and lung trans-
specified is combined with CWP) who underwent lung transplantation
plantations (single and bilateral) listed or performed in the United
during 1994-2017 (Figure 1). Each of these patients was male, mean
States during October 1, 1987-June 30, 2017, and we restricted
age at transplant was 56.8 years (range: 41-69 years), and 49 (79.0%)
analysis to adult (>18 years) recipients. Our organization determined
lived in West Virginia, Kentucky, or Virginia. Approximately one-
that this activity did not involve human subjects, and thus did not
quarter (n = 15, 24.2%) of all lung transplants completed for CWP
require Institutional Review Board review.
occurred during the 2.5 years since the previous report1; 49 (79.0%)
Although OPTN is designed to record both numeric and free text
have occurred during the last decade. During 2007-June 2017, lung
diagnoses at patient listing and at transplantation, for some common
transplants were performed for patients with CWP at a rate of 2.68 per
indications, such as cystic fibrosis, only a numeric code is entered. For
1000 adult transplants; during 1996-2006 the rate was 0.98 per 1000
certain broader indications, such as occupational lung disease, the
(RR = 2.73, 95% CI: 1.42, 5.23). Since 2000, a total of 27 patients (mean
corresponding numeric code includes the phrase “other specify” to
prompt entry of a specific free text diagnosis. However, querying
numeric codes to then screen for more specific conditions (such as
selecting patients with the occupational lung disease code, and then
identifying those with a free text diagnosis specifying coal workers’
pneumoconiosis), will result in missed cases. A previous analysis we
completed using OPTN data found that nearly half of lung transplant
recipients with a specified free text diagnosis of an occupational lung
disease (eg, CWP, silicosis, asbestosis) were not assigned an
occupational lung disease numeric code.10 Thus, a substantial number
of occupational disease cases would be missed if the numeric code was
the only variable used for case finding. For patients who received a
lung transplant, we examined the primary diagnosis specified at the
time of transplant, and included those with a primary diagnosis of CWP
(including those with alternate wordings, for example, “coal miner's
pneumoconiosis”), and patients with a primary diagnosis of pneumo-
coniosis unspecified (prior research suggests a majority of these cases
are likely CWP1). We calculated the rate of lung transplantation for
CWP and pneumoconiosis unspecified, relative to all adult lung
transplants, during consecutive time periods, and the ratio and
confidence interval for these rates. For patients who were placed on
a waitlist, but who had not received a lung transplant by the end of the
study period, we examined the diagnosis specified at the time of listing,
and included patients with a diagnosis of CWP, and those with
pneumoconiosis unspecified.
To characterize the primary payer of medical costs associated with
completed and planned lung transplants for CWP patients, we
identified the primary source of payment for lung transplant recipients, FIGURE 1 Frequency of lung transplant in patients with a
and the primary projected source of payment for patients on a waitlist. primary diagnosis at time of transplant of coal workers’
Additionally, we identified patients who received a lung transplant for pneumoconiosis or pneumoconiosis unspecified, defined as a patient
listed with a free-text diagnosis of pneumoconiosis without
all other occupational lung diseases combined, and compared the
additional specification (top frame); frequency of lung transplant
primary payer for these patients with those who had a diagnosis of
waitlist addition for patients with a diagnosis of coal workers’
CWP. Payment source categories included private insurance, public pneumoconiosis or pneumoconiosis unspecified, as specified at time
insurance, U.S. or state government agency, free care, and self- of waitlist addition (bottom frame), United States, January 1994-
payment. The public insurance category included Medicaid, Medicare June 2017*
BLACKLEY ET AL.
| 3

age = 55.6 years, range: 42-70 years) with a diagnosis of CWP were the end of the study period, more than half were because they had died
placed on a waitlist, but had not received a lung transplant as of while waiting, or were too ill to undergo surgery. Previous registry-
June 30, 2017. Of these patients, 11 died while on the waitlist, five based studies have characterized the burden of severe CWP by
were still waiting at the end of follow-up (mean duration = 228 days), highlighting lung transplant recipients,1,11 but we are unaware of any
four became not healthy enough for transplantation, two improved published reports describing patients who were waitlisted but have not
and transplantation was no longer necessary, and five were removed received a transplant. These patients also have severe, end-stage
from the waitlist for an unspecified reason. disease that should be acknowledged. Five of the patients who were
Among the 143 lung transplant recipients with occupational lung waitlisted but had not yet received a lung transplant were still waiting
diseases other than CWP, 137 (95.8%) were male, mean age at at the end of the study period, and it is possible that some of these
transplant was 54.1 years (range: 22-72 years), and the most common patients have since undergone lung transplantation. Although OPTN
states of residence were Texas (n = 17), Pennsylvania (n = 15), and includes some information on payer type, the relatively high
Ohio (n = 11). Public insurance was more likely to be the primary payer proportion of CWP transplants paid for by public insurance
of medical costs for patients with CWP (Table 1), compared with those programs—and notably “other government insurance,” which likely
with other occupational lung diseases (64.5% vs 40.7%, p = 0.002); includes the Black Lung Disability Trust Fund (which pays for CWP
much of this difference is accounted for by Medicare Advantage and claims when no responsible mine operator can be identified)—merits
“other government insurance.” additional attention. We confirmed with UNOS that more specific
payer information were not available in the registry data.
The primary goals of collecting and maintaining information on
4 | DISCUSSION
transplant donors and recipients are to assure best use of the limited
supply of donor organs, improve post-transplant survival, and protect
During the last two decades, at least 89 U.S. men with a diagnosis of
patient safety. As such, the OPTN registry was not designed for public
CWP have been placed on a lung transplant waitlist, and at least 62 of
health surveillance, and there are limitations to using these data for
those have received a transplant. The rate of lung transplantation for
that purpose. Because patient industry and occupation data are not
CWP has also increased significantly in recent years. Among the 27
captured in the system, it is likely that not all patients with a
CWP patients who were waitlisted but had not received a transplant by
designation of “pneumoconiosis unspecified” had CWP. It is also likely
that the number of cases of CWP recorded in OPTN does not reflect
the true number of lung transplants performed for persons with
TABLE 1 Primary source of payment for medical expenses
respiratory disease caused by coal mining employment. In addition to
associated with lung transplantation for coal workers’
pneumoconiosis and other occupational lung diseases, United CWP and other interstitial conditions such as mixed-dust pneumoco-
States, January 1987-June 2017 niosis and dust-related diffuse fibrosis, exposure to coal mine dust can

All other occupational also cause chronic obstructive pulmonary disease (COPD) including
Primary source CWPa, lung diseaseb, emphysema and chronic bronchitis. Some coal miners with severe
of payment n (%) n (%) COPD caused by workplace exposure could have been assigned to this
Public insurance 40 (64.5)c 57 (40.7) diagnosis group without occupational attribution. Silicosis was the
Medicaid 0 (0) 3 (2.1) leading indication for lung transplants among patients listed with other
Medicare fee for service 6 (9.7) 22 (15.7) occupational lung diseases, and it is possible that coal miners with
interstitial lung disease resulting from their employment were included
Medicare + choiced 16 (25.8) 11 (7.9)
in this category. However, we identified CWP cases using the most
Medicare, no additional detail 2 (3.2) 10 (7.1)
detailed diagnosis information available in the database, and the lung
Dept. of Veteran's Affairs 1 (1.6) 2 (1.4)
transplant trend reported is consistent with rising levels of CWP
Other government insurance 15 (24.2) 9 (6.4)
morbidity and black lung compensation claims.12
Private insurance 21 (33.9) 75 (53.6) Coal workers’ pneumoconiosis is completely preventable and
U.S./State government agency 1 (1.6) 6 (4.3) would not occur without hazardous coal mine dust exposures. Recent
Free care or self-pay 0 (0) 2 (1.4) reports documenting high levels of CWP and progressive massive
Total 62 (100) e
140 (100) fibrosis in Appalachian coal miners demonstrate that the burden of this

a
disease continues to increase, which will likely influence future
Includes patients with CWP and pneumoconiosis unspecified.
b demand for lung transplantation among coal miners.8 During 2014-
Includes asbestosis, berylliosis, metal pneumoconiosis, silicosis, and other
occupational lung disease. 2016, additional measures to reduce coal mine dust exposures, and to
c
Public insurance more likely to be primary source of payment for patients detect early signs of dust-related lung disease, were enacted to
with CWP compared to those with all other occupational lung diseases improve protections for all U.S. coal miners.13,14 In December 2017, a
combined (P = 0.002).
request for information was filed by the Department of Labor soliciting
d
Renamed “Medicare Advantage” in 2003.
e
Three patients with “all other occupational lung disease” had missing payer public comment on existing standards and regulations.15 Although it is
data. too early to assess the health impact of these recent primary and
4 | BLACKLEY ET AL.

secondary prevention measures, contemporary scientific findings ORCID


demonstrate that effective dust exposure prevention remains essen-
David J. Blackley http://orcid.org/0000-0003-0997-1746
tial for all U.S. coal miners. Ongoing health surveillance will be needed
to monitor respiratory health trends over time.

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AUTHORS’ CONTRIBUTIONS
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The findings and conclusions in this report are those of the Continued increase in lung transplantation for coal workers’
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National Institute for Occupational Safety and Health, Centers for 2018;1–4. https://doi.org/10.1002/ajim.22856
Disease Control and Prevention.